[Super Dad]

Debra, I agree with you but I want to add that Nancy also spends time helping people via phone or email. I remember there was a time when the monthly meeting was just not enough, and Nancy spent the extra time to help me survive. She is a fine example of the FEAT BC tradition. Now when I feel too tired or busy to help another parent, I think of Nancy and I help with no hesitation.

Tony

[Super Dad]

Does anyone know if the ME-List still exists? Ruth Allen's web page seems to have disappeared. I've sent many emails to her IUPUI address and she has not replied.

Tony

[Super Dad]

Hi Christine,

I meet frequently with an informal group of Chinese FEAT parents. If you are interested please send me a message at <jledata@yahoo.com>.

Tony

[Super Dad]

I have been told about a web site called "Vancouver Interventionists." It has several pages containing brief descriptions of available therapists:

http://www.geocities.com/vancouver_interventionists/interventionists.html

On the bottom of each page there is a link to the next page.

I am not crazy about the term "interventionist", but if we hire some of these people we can teach them the proper terminology.

Tony

[Super Dad]

Regarding the NBC autism DVDs: I found them by typing "autism" into the search box, and yes they are free. However, when I tried to type in my address for the delivery, I saw: "ShopNBC does not deliver outside the United States at this time." What a disappointment.

Tony

[Super Dad]

I am about to put one of my therapists into my son's Montessori preschool. Would someone please tell me what she's supposed to do in the classroom?

I will ask the therapist to make sure the kid pays attention to and participates in whatever is going on, but I suspect that's not sufficiently intense.

I have imagined these possibilities:
1. The therapist teaches the same curriculum as the Montessori teacher, but adds repetition and reinforcement, and takes data.
2. The therapist brings material from our home program to supplement the curriculum.

Please share your experience. Thank you very much in advance.

Tony (Leo's dad)

[Super Dad]

Dear Nancy, Michelle, Julia, Jen, Tamara, Lis and Lisa: Thank you so much for your advice and support. I never really know what to say when you spend so much time helping me and I have nothing to give in return.

I am seriously considering following Jen’s example of getting some marriage counseling. (I’ve been hesitant in the past because most counselors don’t know the first thing about autism and would therefore have difficulty understanding my point of view. I am quite tired, or even afraid, of talking to people with no knowledge of autism.) The extended family is not the biggest problem, because I can shove them off more forcefully since they cannot divorce me. It was my wife who picked a fight tonight when I said I wanted to attend the next South Fraser ASBC meeting, and I wasn’t even asking her to attend.

I am quite envious (for myself as well as my son) when I see Michelle/Justin or Tamara/Mike work together as a couple to save their children. A common goal is a blessing for a marriage, and it’s nice to see a couple make autism a way to strengthen (rather than break up) their relationship.

Tony

[Super Dad]

I need advice from parents who have been in a similar situation: As I try to run a treatment program for my son, my family is working against me every step of the way. For each hour that I spend helping my son, I spend ten hours fighting with the family.

One problem is that, despite the diagnosis from Sunny Hill several months ago, the family still insists the kid is “just a little delayed.” They believe the various public and private service providers who tell them exactly what they want to hear. The preschool teacher says his behavioural problems are normal for his age and she guarantees she’ll fix everything within a few months. One SLP charged me thousands of dollars for time spent telling the family that “the kid is just under-stimulated because daddy doesn’t play with him.” (That was a great way for the SLP to discredit me after I started asking difficult questions about her knowledge of autism. However I allowed this to continue for a while because the family was in pain and the denial seemed more effective than any counseling.)

A related problem is the family’s focus on secrecy above all else. The family says since the kid will be okay in no time, our first priority should be to protect him from ridicule. I have found myself cut off from any social or spiritual support, because I cannot discuss the one thing that I care about with anyone I know. I have to learn to lie in order to explain the kid’s behaviour in front of friends and relatives. When I have an hour to read some literature on autism, I spend the hour looking for it in the darkest corners of the house. Scheduling of therapy is a lot more difficult when it has to be done in complete secrecy. My biggest concern right now is that I am not allowed to put a therapist into the preschool, because “Tommy will tell his mom and she’ll tell all the neighbours.”

This leads to the issue of ignorance. To explain the need for therapy during preschool hours, I am desperately trying to explain the 10 hours versus 40 hours difference in the Lovaas experiment. I am quite resentful that after all this time I still have to convince my own family that 15 hours/week is not enough. I try to get the family to attend FEAT/ASBC meetings, but they say I should spend the time playing with my son (so that I would see how little I had to worry about). I am finding it more and more difficult to talk to my family, as the distance between our levels of understanding grows wider and wider. This is putting a huge strain on my marriage.

If anyone has previously faced any of the above problems, please share some advice.

Tony

[Super Dad]

Regarding the statement from Jimmy Carter:

I don't believe our politicians are thinking that far ahead. They're thinking:

"Let's postpone this difficult decision to the next premier / prime minister."

Tony

[Super Dad]

Regarding Mina's question, let's read it carefully. She feels it may be too late to start an ABA program because "the budget will be very limited after a child is 6." It's not a question of whether or not the child would benefit from the treatment, but a question of her ability to pay for it.

The fact is, after the latest court decision, the funding may soon cease to exist for children of ANY age. We're all in the same boat. My opinion is that you MUST find a way to pay for an ABA program, because it is critical for your child's future. I've been told by at least two families that they are prepared to sell everything they own.

A more useful question would be: how do I provide ABA treatment within my means? Perhaps we can share some advice on how to run a program on a shoe string.

Tony

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